Saturday, August 18, 2007

A little help?

Two weeks ago, the pediatrician and I were discussing the October EEG and I decided to call and be the squeaky wheel, just check for cancellations. When I called, the nurse said, "I'm sorry, ma'am, we don't have any right now, but since you're on the--Oh, you're NOT on the cancellation list. Would you like me to add you?" Of course I said yes, because the day we scheduled the October appointment I was told I would be added to the cancellation list. I wasn't upset, these things happen. I was just relieved I had called and we were now actually on the list.

This Monday, while Dr. H and I were on the phone discussing a certain small person's bowel habits (we had a close call and almost had to give an enema), and the talk turned to the EEG. She said, "It never hurts to call once a week...eventually they'll get tired of the calls and try and get you in a quickly as possible." I never had a chance to try out her advice, because yesterday we got the call. An opening, next Tuesday at 1:30.

I'm thrilled and nervous. Maybe I'm slightly panicked now, too. I'm thrilled because we don't have to wait until October! Also, I know perhaps I'm tempting fate here, but she hasn't had an episode in a month. If she can hold out, I'm sure with the stress of the hospital environment, we can get one of these on record and that would be priceless. [side note to Fate, I'm not asking for a pass here or being "hopeful" that one might not happen...I'm hoping one will happen, but at the right time. If you could indulge me this one time and not let the Jinx loose on my sorry arse, I'd be much obliged] I'm nervous because this is a 48 hour to 5 day EEG study. I will be entertaining a healthy, active two year old in the hospital for 2-5 days. Oh, and she'll be hooked up to one of these:



I'm panicked because effing Dean is headed this way. We won't know for sure if the hurricane will grace us with his presence until Sunday, but the guesses for now it that he will, to some extent. Josh is on an emergency data recovery team at work. That means that if there is going to be an evacuation, we are flown out with his team to a hot site. That means we don't need to go through another round of hellish Rita flashbacks. But it also means that if we have to evacuate, I'm going to have to choose between keeping the appointment and riding things out in the hospital while Josh flies across the country and my parents take BubTar with them wherever they go....and giving up this most perfectly timed of appointments. I don't think I could bear to have us parceled out like that in case of an evacuation, so if Josh gets the call, I think we'll cancel and fly away...but I can't express how much I don't want that to happen. We need this appointment. When we accepted the closer appointment, our October date was canceled, and if we have to reschedule, I'm sure it will not be before December. Our wonderful insurance runs out in February, so we're always mindful of that when rescheduling. If they are full up until February, then we're in trouble. Initially, they told us that the first available was February, but they pulled strings to get us the October date. I don't know how a reschedule at this point would go. If you lovelies could collectively send some thoughts, vibes, prayers...whatever you can manage that this can play out and we can get the information we need, I would be infinitely appreciative.

Now on to the practical bit of what I need; I know a good portion of my readers are also parents of two year olds, and even if you aren't the parent of a two year old right now, you probably have been in the past. I need ideas of things to keep my KayTar happy in the hospital. For 2-5 days. Hooked up to an EEG machine. I'm good at this stuff, I can keep KayTar entertained so she will stay in her stroller for two hours in the pediatrician's waiting area, but 2-5 days seems like a tall order. So give me your best tricks. Also, if you've been in the hospital with a young child, let me know necessities to be packed, both for her and I. I'll be solo parenting this one. BubTar will be with my parents while Josh works, then with Josh in the evenings. I need a big bag of tricks to get through this.

I am so nervous about this actually happening, but I am excited as well. Answers. Maybe, just maybe, we'll learn something through this. She will be undergoing other tests as well. The geneticist and neurologist will be ordering things, including a lumbar puncture, which I am dreading; but I hope when our stay is over we know a little bit more than when we were admitted.


Last week, one year ago. Our very first hospital trip for an episode.

24 comments:

flutter said...

every piece of my thoughts are with you.

WarriorMom said...

Positive vibes are on their way!

My suggestions are: paper, writing utensils of all kinds, and stencils. And something to put behind the paper like a lap-desk.

Play-dough. Beads and pipe cleaners (or string) for stringing beads. Scissors and junk mail for cutting practice. Bubbles for blowing. Bubble-wrap for popping. The entire line of Melissa & Doug toys, like the shapes & laces.

JF has to sit still for five-ten minutes each day for his Pulmicort, so we've come up with a lot of sitting activities.

Oh, and music CDs, like MilkshakeMusic.com.

Beck said...

First: I'm praying that everything goes well.
Second:
1. sticker books - you can grab a wide variety of inexpensive ones from Dover. Some had a picture of a doll that you can endlessly redress (until the stickers die), some have a little scene that you can put pictures in. They're about a buck each, so I would grab a stack.
2. A dolly with a suitcase of clothing to put on and off. Also, dolly accessories - bottles, disposable diapers, pretend bottles of baby stuff....
3. Fat baby markers and a colouring book.
4. Some familiar storybooks from home and a few inexpensive new books.
5. A deck of playing cards. Mama can play 52 pick up, the most fun game EVER.
6. Wooden clothespin doll blanks - you can use the fat markers to draw faces.
7. Lace-up cards. You can make a few of those pretty easily.
If you need more ideas, let me know.

slouching mom said...

Well. Who needs to say anything after the lovely Beck? She's amazing. I was only going to echo others, anyway -- artsy-craftsy items... Felt boards are great fun.

I will keep you in my thoughts and hope hope hope Dean stays away or turns out to be a wimp.

Sandra said...

I am sending all the good vibes and positive wishes and everything I can think of your way that Dean stays away and you can keep your appointment. Big hugs to you Kyla!

winslow1204 said...

I will hope and pray Dean doesn't hit so you can go to the appointment!! Well.. we hope just hope Dean doesn't hit period, don't we!!

NotSoSage said...

Oh, you've got some lovely suggestions, and so I have little to add. Do you have a Mr. Potato Head doll? Or building blocks? Or flash cards? Those are the things that can hold my daughter's attention for more than 10 minutes...

And I'll be sending good vibes your way and bad vibes Dean's...

bmxmom said...

I hope everything goes well :)

kittenpie said...

Oh, those are tough choices. I send you all my virtual hug vibes, and hope everything is smooth sailing.

Meanwhile, we roll with books, puzzles, snacks, a lovey. For trips to inlaws, we used to bring trains (she was into Thomas) and CDs/DVDs as well, so if the hospital will have such equipment, music or vids might help for some stretches. i have also found Pumpkinpie a bit fascinated by photo albums of us, and there are lots of stories to be spun while looking. Crayons and paper are good, too. Does she do tea parties and such yet? Or some small figures like Little People or fingerpuppets to playact with?

Karianna said...

We had this strange touchy-feely science teacher guy named "Dean" in school. He really liked fire extinguishers. Ahem.

That aside, best of luck with the evaluations. Thankfully, many commenters have listed excellent suggestions. My one piece of advice is to string out the novelty by not showing her every single toy in the bag at once. Maybe even let her open each when the time is right as though it is a present?

The Brady Family said...

My suggestion would be a few cheap kiddy games for the laptop. We have stuff like Dora and Thomas games that do letters, numbers, colors, shapes and also some stories. They were like $7 a piece and Lana LOVES them.

Oh, and colorforms has games that Lana loves as well. She has a dress the girl one and one that you build silly faces. We love the silly faces because its very basic but teaches creativity and turn taking. http://www.amazon.com/Colorforms-72503-Miss-Weather-Dress-Up/dp/B00000J05S/ref=pd_bbs_sr_3/104-8825961-1021566?ie=UTF8&s=toys-and-games&qid=1187499605&sr=8-3

http://www.amazon.com/University-Games-77953-Silly-Stick-Ons/dp/B00000IZW2/ref=pd_bbs_4/104-8825961-1021566?ie=UTF8&s=toys-and-games&qid=1187499605&sr=8-4

Joy, of course said...

Because I believe more in prayer than in fate, I will be praying...for all of it.

For an episode (I cringe to say this, but I understand the need) that the can observe. For conclusive findings in the other tests. For Dean not to disturb things. For you for Kaytar, for time passing peacefully and peace of mind.

Love you Kyla. Do you have a laptop? She can watch DVDs and play preschool CD games. And some hospitals have wifi. And maybe at night you can use it to update us on what has happened because we will be thinking of you.

Christine said...

oh kyla, i so hope the stars align just right so that this all happens for you just perfectly.

and answers would be wonderful. fingers crossed over here. . .

Christine said...

oh here's another idea--an old baking sheet and some magnets. letters, numbers, states, or just plain ones from the dollar store. they love to sit and arrange it.

Kyla said...

You guys are amazing. Thanks so much. Especially Beck, the Goddess of all things Crafty and Child Friendly. ;) All of you have given me GREAT ideas.

The room will have Internet, dial-up, but it is internet. The cafeteria has WiFi, though. But they said I have to call and get electronic devices approved, I guess because of the EEG and interference, so we'll see about the laptop. I hope it is okay.

And Dean is moving!! He is projected to barely touch Texas at all at the latest predictions.

Christina said...

hi kyla-
No two year old in this house (yet)- but I am a peds nurse so I had a couple ideas. If you are going to a relatively decent sized peds hospital let the child life department know as soon as you get there (you can just tell your nurse to get a consult for you if they don't automatically come around). They'll have plenty of fun activities on hand that they can bring to the room and they will know to send all available volunteers, visiting clowns and therapy doggies your way. Then maybe you can take a little break yourself and kids always love the novelty of fun visitors. Also try to stay on a schedule- i think that always helps kids in the hospital- even when they're there for just a short time. Her meals should come at about the same times so it's easy to plan a day around those. Good luck- I hope this all gives you some much needed answers.

~aj~ said...

I'm so glad Dean is headed elsewhere. I'm going to brainstorm on the kid activities and I'll email you later, but sounds like you've been given some GREAT ideas already!

ewe are here said...

I see you have some fabulous suggestions for entertainment already...

I really really hope the stars align and the hurricane bypasses you, the tests go as you need them to go, and you get some of the answers you need.

And I really, really hope you find a new insurance policy to cover your girl. When you posted about your insurance situation on my recent post - I did know you were looking for a new policy (I remember your post on that topic) --but I didn't realize only your daughter was covered. I'm so sad and angry and horrified on you and your family's behalf. This is a choice that parents shouldn't have to make in the richest country in the world.

Fingers crossed on the doctor's appointment for you.

jen said...

fingers crossed for you all, sister.

Em said...

Oh goodness. I hope you get some answers...

JSmith5780 said...

OK...you have the toys and games covered. Now just remember for the duration of the EEG nothing can go over her head so make sure you have LOTS of button down clothes!

One other thing, our children's hospital can provide a gymnastics type mat for the floor, see if yours can. This way she's not sitting on a cold, dusty floor. Much more comfortable for playing.

For your sake, I am hoping she has an episode. There is NOTHING more frustrating than being in there and waiting for something to happen. Been there, done that!

nomotherearth said...

Sending you my best vibes.

Everyone has suggested great things, so I'll just echo the things that I know the Boy would like: portable DVD player, playdoh, Little People & cars, stickers, drawing and painting stuff.

Good luck!

Anonymous said...

maybe some chunky beads that she can string on a shoelace to make "jewelry" for the two of you?

digital [video] camera and laptop so she can perform and then watch herself? would it be possible to set up video conferences with the two of you and the guys left at home? even just talking on the phone with them might keep her occupied for a while.

i used to really like the paint with water coloring books where all you need is a cup of water to make the colors appear. much cleaner than regular paints, too!

some cheap makeup or face paint you can put on her (or she can put on you?) and a mirror to see the results?

and in even more total assvice (though this is probably a new level of ass-ness), my sister (an emt and soon-to-be med student) was telling me about this disorder she learned about called bppv. and as soon as i heard about it, i thought of your kaytar. i'm sure it's something you've already investigated, but just in case it's not i figured i'd put it out there.
http://www.mayoclinic.com/health/vertigo/DS00534

alejna said...

One activity/toy that I didn't see listed is a bag of strings and ribbons. We just took our 17-month-old on a long trip, and her pouch of strings kept her entranced longer than I would have though possible. I grabbed a variety of gift-wrap ribbons and bows, cloth ribbons, string, twine, yarn and scraps, giving a range of textures, colors, lengths, etc. I knotted and bundled some for some added variety, curled some of the ribbons, and included some gift-wrap tags on some.

I will be thinking of you and hoping for the best possible outcome from your hospital stay. I wish you continued courage and energy to make it through, and hope that the answers will come soon.